A WORLD OF BEAUTIFUL CONTRADICTIONS

Sensory Processing Disorder

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It’s midnight and Jordan has been asleep for three hours. In that time, he’s sleep-walked into the living room where Jim and I were watching TV twice. Each time there was a sense of panic in his eyes and he was talking about whatever dream he was experiencing through tears and the obvious confusion that comes when you’re walking around dead asleep. As funny as his sleep-walking and talking can be at times, this one has left me feeling gutted.

It’s been a tough week for him. He was sick earlier in the week, but then he got well enough to attend a going-away sleepover party last night for a friend who is moving. It was a big step for both of us- his first sleep over with more than very close family friends and definitely his first large group sleepover. It wasn’t the best experience for him- some of the kids were very rude and treated him unkindly- but I was so proud of how well he did. The mama bear in me wanted to go and do what mama bears do when he told us how things went, but Jim and I know that this is part of life for all kids. We just need to do our part to teach him how to maneuver this time in life and trust that he’s going to be okay. (Within reason. I’m still me and can still go full on mama bear when I need to.)

After we picked him up from the party we went to a family BBQ with lots of people, stimulation and more opportunities for his anxiety levels to rise. The BBQ was at a house on a small cove on the lake, and Jordan’s big sis and her friend floated out into the cove on a giant float-toy. Jordan decided to go in the kayak to “rescue” them and, even though he’s gotten into that dumb kayak 20 times without tipping it, he just couldn’t do it today and kept tipping it over. It was so frustrating for him, but he was trying to rush so much to go and save the girls. He didn’t like them being out there without a rope or way to get back in. Some of the family was watching him struggle to get into the kayak, and of course it was comical, but to him it was far from funny. I could see his struggle- wanting to rush to get out there, feeling everyone watching, being so embarrassed that he kept tipping over. It was just an overall tough time, but again, Jim and I were so impressed with how he handled himself and how he bounced back so quickly.

When we got home, he was so exhausted he just conked out. It’s been quite a while since he’s done a lot of sleep walking. I know being as tired as he was is a big part of it, and anytime he’s had a lot of anxiety he’s really a sleep talker. I can’t get the kid to give me three sentences about his day while he’s awake, but if he’s sleep talking I know it was a doozy.

After his second time up tonight, we couldn’t get him to settle down enough to get some peaceful sleep, so I just decided to go to bed with him and try to keep him calm. In the time it’s taken me write these few paragraphs, he’s wrestled around three times and told me “We just can’t stay here any more. These people are not okay!” “We have to go. They don’t want us here and they’re just going to keep hurting us,” and “It doesn’t matter how nice you are to them, they will just keep trying to hurt us. This is a horrible place!” This is the same thing he’s been saying for the last two hours.

I don’t know what he’s dreaming about, but as I lay here comforting him the knot around my heart just keeps tightening as the tears stream down my face. Maybe he’s dreaming about a video game. Or maybe the tension and anxiety from the last few days while he’s been holding it together so well are finally finding a way out.

I know that nothing that has gone on in his world is so horrible. Kids feel left out at parties all the time. And I can’t count the times I felt the red heat of embarrassment creep over my face when someone laughed at a clumsy mistake I made as a kid- or even as an adult. This is life. But when you’re an incredibly sensitive kid managing more in life than the average person, it just sucks a little extra. And when you’re the mama bear of that kid, you just feel a little extra mama bearish too.

Here’s hoping the nightmares end and peace can settle on his tired soul tonight.

This time next week, I will have just tucked my kids into bed in preparation for their first day of school. This time next week, I will be an emotional wreck.

As internet friends all over the country have been sending their babes off to school this week, I have been watching closely. I’ve been reading their posts and emails about feelings on loosening the cord and saying goodbye for seven hours a day. I’ve also been reading article after article about easing the transition and offering the right kinds of support to the people we are sending off. Some might say I’m working myself up over nothing. I say, I’m arming myself for the battle. “What the hell is so stinking bad about sending your kid to school?” you ask. Nothing, I guess. For most moms.

I; however, am not most moms. Among a myriad of personal issues too neurotic to name, I’m also a mom of a kid with Sensory Processing Disorder. You may be wondering what SPD is. You may be rolling your eyes and guffawing that another mom is buying into another “disorder” to make excuses for their bad parenting. I know there’s plenty of people in my life happy to have that same response.

For those of you eager to pass judgement, save it. Just save it and keep moving on. For those of you wondering what SPD is, it’s a neurological condition that makes it difficult to process and act upon information received through the senses, thereby creating challenges in performing countless everyday tasks. To the average person, the child may look like an incredibly shy introvert that hides under her mom’s skirt and refuses to play at recess, or he may look like a wild maniac that bounces off the walls, runs over the other children and refuses to settle down and obey even the most basic classroom rules. (Some children that look like this, simply are those things, and some children aren’t. It’s up to parents to investigate and decide what category their children are in, and I’d happily support all parents in their decisions.)

Just like thousands of other parents in my position, I’m anxious about many things as the beginning of the school year approaches. Have I been too lax this summer and created a monster for his teacher? Will he be able to grasp a new routine, new rules, new environment that is different from last year’s? Will the support the school has promised in order to help him succeed truly be there? Will he come home every day with sad faces on a report regarding his classroom behavior? Will his report cards hold all ones and twos or will he be on “grade level” threes and fours? How the hell am I going to do this? Am I a failure as a mom? And a thousand more questions just like these. On a loop. In my head.

More than anything right now, I hear these words: “Do not let that school put a label on your son. It’s not worth it. You know he’s a good kid. He’s just a little boy. Don’t you dare let them label him.” As much as I have struggled with the decision, I have let them label him. Do you know why? Because I’m not too proud to let my son get the help he will desperately need to succeed throughout school. Do you know what the label means for my son? The label means the difference between him growing up to be a tow truck driver or an engineer if he wants to. (Not that I would have a problem if he wanted to grow up to be a tow-truck driver. God bless the tow-truck drivers. But if he wants to be an engineer, then he should have that opportunity.) As much as I know in my gut that I have made the right decision, because I know my son, the people in my ear that don’t agree with it, wear me down and make me question myself. I’m not proud of it, but it’s true.

And then I remind myself: that label, those extra classes and the special seat he gets in the classroom? Those are the difference between success and failure. The therapy he receives? That’s the difference between learning to read fluently by the end of the year, and it taking until fifth grade to read at a first grade level. That file? The one that they keep in the office that says my son has special needs? That file doesn’t mean shit to me, except that my son, the one that I am responsible for, he gets to have his best shot at life.

I cannot wrap my mind around stubbornly refusing my son his best shot at life just because I am too proud to let someone evaluate him and put a label on him. If every time he ran around the track in PE he turned blue and couldn’t breathe, would I refuse to let a doctor check him for asthma? If they found he had asthma and I refused to let him have medication to treat it, would I be a good mom because I wasn’t letting someone label my son as an asthmatic? Would I be teaching him a special kind of discipline that would turn him into an Olympic sprinter later in life or would I be hamstringing him for the sake of my own pride? Does that make any sense whatsoever?

This year, I will be entering new waters. In the four earlier years I’ve had children in school, I’ve never been the mom that had to attend IEP meetings or therapy sessions. I’ve just been the mom with the smart kid and the cute kindergartener. Now I’m the mom that decided not to take that great job so I could be the mom that goes to school and helps with the hard days. I’m the mom that packs the special bag and does the extra work to make sure things go smoothly. I’m the mom that makes sure the label doesn’t mean he gets stuck in the seat in the corner, but gets all the special help he needs to be the brilliant kid that proves you wrong. I’m that mom. And I’m bad ass.

*I feel badly that I didn’t add this earlier, but I also want to make clear that my husband is also that dad. He supports every decision and makes every hard sacrifice right along side me. When one of us has lost our focus and determination to give Jordan his best shot, the other is there to remind us why we’re doing this. He lovingly watches me devour books and articles and try crazy-brained ideas to help ease life around here. He sacrifices for all of us. And he is most definitely bad. ass. :)*

Today was a successful day in the land of “impropers.” Well, successful for the most part. I still have around a half ton of dirty laundry to reason with, but lately, that is of no consequence to me. I am immune to the piles. Unless, of course, no one can find underwear. Then, there’s a problem. So…I better get on that.

I woke up to two snuggly kiddos on either side of me, giggling as they tried to sneak in and steal some time on a rare morning that daddy was already gone and they woke before mommy. After a few minutes, we thought we better get moving. I hopped in the shower and called Jordan to get in right as I was getting out so I could wash him up. He got in right away and there were no problems in getting ready for school. He moved quickly and without incident.

Jordan jumped off the bus when he got home and showed me his daily report from his teacher – the third day in a row this week that he got all smiley faces for his focus and behavior during class. He worked on homework, had a healthy snack, and then went outside to play with friends. It’s dinner time and he just kindly asked for ten more minutes of play before he has to come in. So I said yes. Because he asked nicely and without a fit.

Why are some days so easy and without incident where others are ridiculously like all of us are trudging through quick sand to get the basics done, and even that is asking too much. I swear there is not one thing that I do differently. I know there is supposedly nothing but the “pistons in the brain firing differently” from day to day, but that just doesn’t do it for me. I need a miracle formula that makes for days like this every day. Do they sell those on eBay?

Please don’t get me wrong, I’m not complaining. I love days/weeks that things are so darn easy. I just wish I knew how to replicate them.

I feel so torn about writing so publicly about this process with Jordan and having him evaluated for Sensory Processing Disorder and/or other similar “whatevers.” I don’t want him to look back on this when he’s older and feel like I exposed him. But, I also know my kid, and I know that there’s a 99% chance he won’t mind, and would be happy to help one person, even if that is just mom. So, for now, I write. Until I don’t feel comfortable with how he would feel about it.

I have been reading books and articles and blogs like a crazy person lately. On one hand, I feel like I am empowering myself with knowledge and perspective. On the other, I think I’m just getting some relief from the fact that I may have some answers. Every time I read a new “symptom” that has been a funny little quirk or annoying habit Jordan has exhibited over the past few years that we have passed off as “just Jordan” I go through a range of emotions. I feel intrigued that some simple things may actually be involved in a bigger picture. I know I’ve made light of the fact that I hoped Jordan would be able to “wipe his own butt” by the time he reached college, but those types of situations are actually a common part of this life. I feel like an ass for being so cynical about something that he truly does just struggle with. But, at the same time, I am still just a smart-ass mom that is sick of helping clean up after challenging trips to the toilet. This is just such new territory to me. As much as I want to be sensitive, I know I also still have to help him learn every thing in life that every other person learns, even if it is a little more challenging than it might be for the average babe.

Jim and I are both taken aback by how much new patience and even grace we feel in navigating through life with Jordan lately. We both had a sense of it even before we had a name to put to the struggles that were going on. Now that we are seeing that many of those struggles aren’t just because Jordan is being stubborn or spoiled or purposefully difficult, but are actually a part of a bigger picture, we are both amazingly calmer and more in tune with his needs and how to not only teach him, but find a way to communicate with him in a way that connects the dots for him. If you don’t know anything about SPD, this will probably sound weird to you. And, let’s face it, I am two weeks into knowing anything about it, so I could be so freaking wrong right now it’s ridiculous. Either way, I just know we are feeling a new level of patience, which for us, was mandatory!

Both of our kids are so supported and loved by our family. Saturday was Elle’s birthday and the child spent a solid hour or more on the phone with different relatives calling to wish her a happy birthday- and that didn’t even include the family that we spent the day with. Jim and I kept remarking about how supported our kids are and how they will never lack for love and nurturing. That is such a relief for us as we think of both of them and what hard work growing up in this generation really is.

We have friends who live across the state from us, and have a child with SPD. They were so gracious to offer some of what they have experienced with their child to us. As I was reading through it tonight, as I have been more often than not lately, I was in tears. I swear I could have been reading about many of my days with Jordan as I looked over this information about their experience. I am so overwhelmed with gratitude that we have friends and family that are supportive to, not only us, but more importantly, Jordan. It was so encouraging to read through the every day struggles that all parents face, but even more so when you’re experiencing more than just the average bumps in the road. Knowing that parents I have deeply admired as extraordinary are facing some of the same hurdles and even impatient and less than perfect attitudes that I *occasionally* (um-hmmm) do is just so encouraging.

I guess what I’m saying here is, we are moving forward quite comfortably. Every day is full of a new challenge but also more encouragement. I am a happy momma.

Like this:

I read a quote recently that I assume is about three quotes rolled into one as only a sleep deprived, scatter-brained and desperate mommy is capable of. It went something like, “a mother’s work is never done; from sun up to sun down, and more if you have a son.” I would like to lend a hearty amen to that. Actually, I may have actually made that up. I can’t even remember anymore, because let’s face it, my brain is like oatmeal 75% of the time these days. In addition to the usual mommy and wifey tasks I have on my plate, I have a new obsession. It’s called “name that disorder.”

I say “disorder” very lightly at this point because I really don’t think I like that word for our situation. At least, I’m not ready to say it yet. Have you ever been in a position with your kids (or dogs or significant others for that matter) where you know something is up, something big that is going to require a major change in the way you do things, but aren’t ready to really say it out loud? It’s probably safe to say that’s where I am today.

We recently had school conferences for our little man who is nearing the end of Kindergarten. This is a conference I have not been looking forward to. I knew what was going to happen. I knew the words “not ready to move forward” were going to be said. I knew the school’s learning counselor was going to be there. I knew because I invited her. I invited her because I knew we were at a point where I needed help.

Let me tell you some things about the little man. He is six and the size of an eight or nine year old. Seriously. He is the most sensitive, loving and kind-hearted little guy you’d have the privilege of knowing, even if you weren’t his mother.

He has also been referred to as the following things: “destructo boy,” “mr. destructicon,” “aaaalllll BOY,” “three boys in one,” “just a typical little boy with lots of energy. LOTS of energy,” “rambunctious,” and oh so many more. Are you catching my drift here?

He’s also known as a tender-hearted sweetheart,” “Mommy’s little boy” (aka: Keli totally babies that kid and coddles him) and “the baby” of our family.

For all intents and purposes, Jordan is “normal.” He really is a rambunctious little guy that is all boy full of energy. He’s a boy that likes to run and jump and climb and play. He’s a little boy that likes to be good at stuff. He likes to be praised and be told he’s doing well. He likes rewards and stickers and routine. He is also a little boy that learned to throw himself out of his crib before he could even crawl all that well and one that we had to lock in his completely bare room at night in order to keep him safe because of what an expert “house explorer” he was. Trust me, once you find your toddler sitting on top of the stove attempting to turn on the burners, locking him in a completely empty (except for a bed) and child-proofed room at night no longer seems like child abuse and just seems damn smart.

Before this year, we tried Preschool twice with Jordan. Both attempts were very unsuccessful. Both attempts ended with us removing him from the class and saying we’d “try again next year.” We also had him in a formal daycare situation for a year and a half. You’ve probably heard me refer to this as the time from hell, and the reason I became a home daycare provider. All this time, I secretly wondered if there was just a little more going on with Jordan than met the eye. I always waited for someone to tell me that he had some sort of a “disorder.” Each doctor visit I waited for someone to say “autism” or “aspergers” or something. Each time no one did, I was relieved, but left with lingering wonderment.

Beginning Kindergarten this year, I knew at some point there would be a “conversation.” You know what I’m talking about. That moment when the teacher or counselor comes to you and says the combination of some dreaded letter formation that means my kid is labeled for the rest of his life. I was on guard. I was scared. I was hopeful. Hopeful that it would be the beginning of some sort of answers to questions I haven’t dared to even utter out loud. Questions I knew I would be judged for asking and questions I didn’t want to be thinking. Questions like, “what if Jordan isn’t just ‘all boy’ and has something special going on inside of him?”

Part of me feels like a coward for not asking those questions out loud much sooner. And part of me knows I’m a coward for not wanting to face the opposition that I feared would come from some people around us, saying once again that “Keli is a dramatic, over-reacting attention-seeker.” Could Jordan be having a far more successful Kindergarten year if I’d asked someone if there was something special going on and would they have even listened? I know I’ll never know the answer to that. And it’s stupid to even ask it, since it really doesn’t matter at all.

The point is, I am asking questions now. I have started down the road of finding out if there’s something I can do to help my little man learn how to read, learn how to sit still when it’s carpet time and he doesn’t like sitting there in that completely unstructured circle listening to sounds that have nothing to do with story time, and learn that no matter what, he’s smart- probably even too smart. We are letting someone that knows far more than we do take a look at the way he thinks and learns and reacts and responds to see if there’s something more there than “a typical little boy that needs more discipline and less coddling.” There may be, and there may not be. I’m completely open to whatever it is we find out. I know no matter what, we will all benefit from this experience, we already are.

But, the more I read about a little something called Sensory Processing Disorder, the more I know, deep in my gut, that I have finally stumbled onto something that may make my baby’s life so much less frustrating and so much more “right.” My mother-in-law always tells me that God gives us the kids we need in order to make us the kind of people he wants us to be. Never more than in this time has that statement been so true for me. I love my kids more than anything in this world, and I will do all I can to be the mom they need. I’m not perfect, but I think that’s what makes me such a good mom.

I know I’ll be processing my way through this experience on my blog. I know it’s not what many of you expect when you log on, and I’m sorry if this is just not for you. But, as always, this is where I get my crazy out. And right now, my crazy pretty much revolves around this. I hope you’ll stick through it with me. Or not. I can appreciate that too. I also want to apologize for my absolutely non politically-correct or proper verbiage when I talk about these things. I know calling a kid “normal” is frowned upon. I know there are better words to use than “special” or whatever. I don’t care. This, for now, is me exploring a world that is foreign. I don’t mean to offend or be off-putting to anyone. I just need to get the crazy out.